“My son hates going to hospital. He used to plead with me not to take him there but now he has stopped. He has realised that I cannot do anything. Now he just hugs his Chota Bheem doll and cries the whole time. No father should have to let down a child this way,” says Mahanteya, Manaswin's father.
Manaswin keeps crying when he is brought to the hospital
Manaswin hates the hospital because it has brought nothing but pain to him. He has already undergone two hernia surgeries, treatment and several painful tests. He is too young to know that without the hospital, his life will become a living hell because he has a rare disorder - Hunter's Syndrome that will damage every part of his body if it is not checked soon.
Fearing his reaction, his parents now tell him they are going to ajji's house (grandmother's house). When their baby brightens up and brings his shoes and his happy smile hoping to see his grandmother, their hearts break a little for the lie. Manaswin's happiness breaks and he starts crying when he once again sees the dreaded hospital.
Manaswin has turned from a happy, curious child to one who is always fearful
Manaswin's condition is only the latest tragedy to strike this familyMansawin’s parents have been through a lot. They take care of their aging, ailing parents. Mansawin’s mother had a painful knee surgery for which they spent over Rs 2 lakhs - a big amount for them. She was just recovering from her surgery when tragedy came knocking on the door.
Manaswin developed fever in July, 2016. Blood tests that showed that Manaswin had a condition worse than cancer - mucopolysaccharidosis type 2 (MPS-2) or the Hunter's Syndrome. His body is not capable of processing enzymes which will eventually severely damage his cells. He is very lucky his condition was caught before significant damage to his body.
Manaswin loves his mother - he runs to get her the band-aid box if she ever complains of pain
"We have seen what children with this condition go through. Their bodies are severely damaged. And the damage does not stop - it keeps happening. The doctor says we are very lucky Manaswin's condition was caught before his brain suffered any damage," says Mahanteya
At this age, kids play in school but my son is stuck in hospital going through painful treatmentMahanteya and his wife Maheshwari were planning to take Manaswin to school this year, but instead have to go to the hospital. Mahanteya is the only earning member of his family and has to care for not only his wife and child but also his aging parents and grandfather. Manaswin was his family's bundle of joy through the bleak times. But now, everyone is worried sick.
"If any one is hurt, he will come running with a band-aid box and now he himself is suffering from life-threatening disease for which the treatment is too expensive for us. This innocent, sweet boy deserves to get a chance to grow up healthy and strong,” says his father
Little Manaswin finally knows that his father cannot save him from pain
Life has come to a halt for this family. "My son used to love playing cricket. He used to play at home the whole day and wait for me to come back so we could play together. Now, Manaswin hardly speaks and he has stopped playing cricket because he is always in pain," Mahanteya says.
Manaswin's parents do everything they can to cheer him up after a visit to the hospital
Manaswin finds it difficult to play and speak like before. The stitches from his hernia surgery are still fresh. It itches all the time and he scratches is without knowing that this is bad for him. He has even made it worse through scratching - causing an infection.
Only surgery can save Manaswin but it is too expensive
The only way to save Manaswin from this unimaginable suffering is a Bone Marrow Transplant. His father is an HLA match. But the current financial condition of the family is very bad. They have already spent over 2 lakhs just for the tests.
His surgery needs around 30 Lakhs which is not possible for Manaswin’s father to afford. Manaswin’s father has drained all his wealth and has even approached for loans from friends to manage the treatment.
“It is the dream of every parent to provide the best for their kids but we just want our child to live. Manaswin is a little kid, and his life is being taken away from him. I want him to get treatment before it damages my child any more.”
How Can You Help
Baby Manaswin needs your help. He needs a surgery immediately. MPS-2 has already done a lot of damage to his body and his face is changing. If action is not taken now, it will kill him. Help Manaswin fight his condition and live a healthy life.
The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organiser or the medical team.
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